This is a blog that describes my thinking about autism. I hope to establish a dialogue with those interested in this subject. I believe in openness of discussion which includes different points of view.

Thursday, October 29, 2009

“Change scares me. I feel as if I need to stay within the boundaries and cannot go outside those lines. I keep everything simple because the boundaries outside of myself are so fixed. It is too scary to step outside of myself. I feel less scared when I keep things simple. If things become too complicated, how will I know how to react? I might be seen, as “wrong” and I cannot let that happen. By keeping everything the same, I will have some control over what to expect. If change happens too fast, I lose control and do not know how to be and react.”

Let’s make sense out of this autistic child’s experience. We can only surmise what he might be telling us. It seems he has defined limits that he cannot go beyond. It is interesting to wonder why these borders got strongly defined. He seems to get too anxious if he goes beyond his boundaries and we may also say beyond his comfort zone. He is afraid that he will not be able to react appropriately if he goes beyond what is familiar to him. He is also afraid that he will be seen as doing something wrong which in turn he needs to defend against. He is also letting us know that having control is important to him because he is afraid he does not know how to act beyond his defined boundaries.

We are all familiar with the person with Autism Spectrum Disorder (ASD) who needs to keep everything in order. If one thing gets out of order the child may either tantrum or immediately correct the ‘error.’ For example, one boy I knew would line up in order his alphabet letters. If I would take the ‘A’ and put it behind the ‘M’ he would immediately put the ‘A’ back in its proper place. Some children will tantrum if they know one way to travel to school, but a different route is taken. Another child might become difficult when the sequence of activities within the classroom or at home is changed.

Change is difficult for all people autistic or not. Change presents an uncomfortable position for us. For example, people typically sit at the same place around the dinner table or may sleep on a certain side of the bed. We all have a reaction to change, if somebody else sits in our chair or our side of the bed. It is normal to feel irritated by these changes especially if another person creates them. We feel our territory has been invaded and we want things to go back to the way they were. We may feel unjustly intruded upon, unfairly treated or even taken advantage of.

This is also true for the autistic person except the person with ASD reacts more strongly and may not know how to regulate himself when a change is imposed upon him. I believe that the autistic person struggles so much with change for a number of reasons: 1) because of an incomplete attachment, the child is not sure of himself and cannot use himself in relationship to others (lacks self-agency), 2) he has no way to tell others how he is feeling or to defend himself, 3) living in this manner may lead the child to closely monitor what he does know and thus keep everything in order, 4) this order may bring him a sense of mastery over his environment and a sense of calm in an internally un-calm existence, 5) when he keeps things in order he knows what to expect and knows how to interact within this controlled world, 6) change to this ‘order’ presents the fear of the unknown which is probably accompanied by extreme anxiety, 7) something new, such as a new route to school or a new food to eat presents unknown possibilities that he has had no experience with and especially no control over, 8) in essence he does not feel prepared to interact with the change. It literally ‘rocks’ his universe.

I believe that change is one of the hardest things for people with ASD to master. I believe the child holds on to not changing because 1) internally he cannot go from one part of himself to another, 2) control or not changing allows the child to feel sure of himself and know what to expect, 3) if you cannot talk and defend your point of view you cannot allow anything to be different than what you already know and have immediate control over, and finally 4) to allow another to impose a change is basically saying “I trust you and myself.” It also says, “I can allow you to have power and influence over me.”

In my next blog, I will discuss how one can work with the person with ASD when the child is resistant to change and needs to control his environment.

Thursday, October 22, 2009

“Sometimes I practice looking at someone directly to see what it feels like. If I practice long enough maybe it will feel okay to do. I notice that this is important, but it goes against my rules. If somebody made me look at him in the eye, I would probably do it, but you better believe that I would hate him. I will look someone in the eye when I am ready and do it in my own time and space. If someone is trying to fix himself that part is just not ready yet. Have you figured out that I am very stubborn? It's not that I like being stubborn, but I need to protect myself.”

Let’s make sense out of this autistic child’s experience. We can only infer what is going on within him. He seems to be telling us that eye contact does not come naturally to him. He also might be saying, “leave me alone and do not force me to use eye contact.” If he is forced, he is saying he will resent that person’s interference. Finally he is telling us he is trying to fix his situation and does not want to be intruded upon by others.

What do we do about this child’s lack of eye contact? This is a quandary for us because as ‘typical’ people we know that when good communication is taking place eye contact is direct and focused on the other person. With the person with Autism Spectrum Disorder (ASD), this is not the case. In fact it appears to be just the opposite. The urgency is to want the person with ASD to be in the world and be like us. This may cause us to force or demand the child to use eye contact. I believe this is putting the ‘cart before the horse.’

As we know people with ASD struggle with communication and relationships with others. Eye contact stands out as a nonverbal gesture that feels troublesome for those who work with or have children with autism. I believe that the child will start to use eye contact when he is ready. Thus we need to be patient and let it happen in the normal course of the child’s development.

Some thoughts to think about regarding eye contact: 1) the child is not deliberately being difficult by not using eye contact, 2) his body will not let him use eye contact or let him use his bodily gestures as we might be familiar with, 3) this does not mean that the lack of eye contact cannot change over time, 4) as the child develops his ability to communicate verbally, his use of direct eye contact will develop as well, 5) in fact it might be the last nonverbal gesture he will be able to conquer. This will vary from child to child, 6) eye contact is a nonverbal (gesture) communication from the unconscious of a person, 7) when communication is good we say that the person is congruent. Their verbal communication is complimented by their nonverbal gestures (eye contact being only one of many nonverbal gestures). This means that the person will use direct eye contact when he feels more comfortable with his verbal communication and his relationships with others. Eye contact demonstrates the individual’s confidence and self-esteem, and finally 8) a way to think about eye contact is that the child will use ‘eye’ contact when he can use ‘I’ contact.

Thursday, October 15, 2009

“Why does everyone know the ‘rules of how to live’? Why do I have to fend for myself? I continue to be a lost child drifting in air and at the mercy and whim of others. My body will not work like those of others. I have no control over my bodily functions. I am not in control, but feel everyone else has control over me. Is there anyone that is listening and do you know what I am saying? Why is it taking you so long to understand my plight? I feel that I will have to live in this never land the rest of my life.”

Let’s make sense out of this autistic child’s experience. We can only hypothesize about what is occurring. This child believes he has been left out of the developmental process. He is very aware that others can function appropriately and that he cannot. He feels no control over his body and feels he cannot make a difference in his own life. He is also looking to others to help him with this predicament. He knows he cannot manage this situation by himself. Finally he believes there is no hope for the future and that his life will forever remain the same and he will remain in a ‘never land.’ He communicates great frustration and hopelessness.

This child is also describing the experience of not having had a completed attachment. From the work of John Bowlby and Mary Ainsworth attachment theory has developed. Without going into the details about attachment theory (if interested review the work of Bowlby and Ainsworth) four categories of attachment have been recognized and it is believed that all people (including those with ASD) fall within these categories: secure, ambivalent, anxious and disorganized. It is my opinion that people with ASD do not fall within any of these categories and have not yet had the benefit of a ‘completed attachment.’ Instead I have proposed a new classification that takes into account the autistic experience, which I call an ‘Incomplete Attachment.’ Instead, the child is left in a dissociated state, unconscious and waiting for the attachment process to be revitalized. If you have never experienced an attachment you are left to navigate the world without a sense of security, trust and ability to use yourself in relationship to others as one would have who has benefited from an attachment. Thus it can be said we are working with a person (ASD) who has no experience of being able to experience themselves in relationship to others. It is important to note that this is a major reason the child with ASD has difficulty navigating interpersonal relationships.

Therefore the process to help the person with ASD is very time consuming, complicated, but not impossible. It is time consuming because we need to start at ‘square one’ in helping the child to develop a secure attachment, trust others, gain a sense of security, develop the ability to self-regulate, to learn to communicate and to express his feelings. All these developmental abilities would have been acquired through the attachment process, which this child has not benefited from. The key purpose of this blog is to emphasize that the time consuming nature of working with those with ASD is daunting, but can be navigated. The child can develop what is called an earned secure attachment, but the development of an attachment will be more time consuming and difficult than if acquired as an infant. The solution is to not give up, but instead to keep the hope alive that the attachment process can be successfully completed for the child with ASD.

Thursday, October 8, 2009

“I cannot ‘come back’ and defend myself. I cannot respond to others. This is scary, beyond scary. It is terrifying. Sometimes the words seem to be accessible, but as I open my mouth they disappear. In the presence of another, I instantly forget what I was going to say. This happens over and over. I want to talk, but I forget what to talk about. It feels like I am a blank slate. It petrifies me. People on the ‘outside’ expect me to talk. What am I going to do? Sometimes I watch real carefully to see what would be a good answer and give them back what they want. I am pretty good at this. I feel this is the only way to survive. Survival is becoming my middle name. Who would ever understand that I am a blank slate? When I am alone I am not blank, but in the presence of others I am. I am a blank slate walking around in a person's body. Please help me. This is too much for me to know. Who will listen to my burden?”

Let’s make sense out of this autistic child’s experience. We can only deduce what is going on within him. He seems to be telling us he has no ability to respond to others and this scares him very much. He says he wants to talk, but in the presence of others he goes blank. By himself he is not blank and can form ideas and probably has feelings. Finally he feels burdened by this experience and there is a sense of hopelessness and desperation in his writing. In my previous blog, we understood his experience to be a feeling of lack of freewill and control over his environment.

This child is describing the experience of not being able to express himself as he sees others do. It is a tortuous experience, which he seems to lack the ability to change on his own. I believe it is important to note that this phenomenon is probably going on with others with Autism Spectrum Disorders as well. He is describing how relationships cause him tremendous anxiety and cause him to collapse. He is not ‘falling apart’ because he wants to, but because of the anxiety.

How can we help this child who seems to collapse in relationship to people? Some steps that may be helpful for the child and yourself are 1) recognize that he has the potential to communicate, but the presence of another makes him feel too anxious and he ‘goes blank’ or forgets what is on his mind, 2) he is not going blank because he is willful or difficult, 3) help him to understand that you understand his predicament, 4) help him to become more comfortable with others including you. Until his anxiety is under control he will continue to go blank and finally 5) give him the time and space to talk. Create opportunities for dialogue with you.

Anxiety is something that people on the spectrum are always trying to manage. We need to put ourselves in their shoes. If they lack self-agency and dissociate in the presence of others, which creates an inability to communicate their needs than their daily existence will be one of coping and anxiety. People in general remain anxious when they do not have a way to self-regulate. 'Typical' people talk about their problems with others and hopefully find new solutions to manage a given situation or their anxiety in general. Because autistics do not have the ability to communicate their feelings we have to find other methods to help them to self-regulate.

What can we specifically do to help the autistic who is anxious? There is not an easy answer, but some thoughts to consider: 1) Talking about anxiety in general may be helpful. If the child is nonverbal, speak about how he might be anxious doing the specific thing he is doing. If he does have words either ask him how he is feeling or interpret what his anxiety might be like. Let him respond to you. It is important to not expect that he will be able to speak about his anxiety, but at least allow for this to be part of the discussion between the two of you. By doing this he is acknowledged for how he is feeling and hopefully in turn feels understood, 2) make room for the discussion of anxiety as part of the dialogue, 3) let him have the time he needs to warm up to new situations and not be pressured to comply to others' time frames and 4) work on developing a relationship with him that allows for mutuality, dialogue and direct expression of feelings.

Thursday, October 1, 2009

I feel like I have no mind to use with others. I know I have a mind. It thinks. It sees. It reads. But this mind is different than others. This mind disappears in the presence of others. Others’ minds are the boss of my mind. I am at the whim of everyone. I feel like a ball being tossed from one person to another. I am controlled by whomever I am in front of. It is as if the “other” controls me. I lose myself in the “others” presence. Myself, my mind, does not work with an “other.” It stops and goes blank. It is scary to not have a mind that I can use. It is like others stop me from existing. They have the control and I must adhere to their existence. They have not been left out. They are people.

Let’s make sense out of this autistic child’s experience. We can only guess about what is going on within him. He is telling us that his mind seems to be different than others. In other words, he is aware that he feels different from others. He is also telling us that he has no control over his mind. He knows he can function intellectually (reading, thinking and seeing), but loses access to what is on his mind when he is in the presence of others. Additionally, he is telling us he feels controlled by others ‘very’ presence. It appears that he has no freewill and control over his environment, but instead feels like he is at the mercy of whoever he is in relationship to. Finally, he concludes that others have the control and he must adhere to that control.

This child is describing what I call a lack of self-agency. Self-Agency is the ability of the self to take initiative, to regulate oneself and to be the source of one’s behavior. How can we help this child who lacks self-agency? Self-Agency develops over time, as does the child’s ability to take initiative and to take control over his environment. This does not happen quickly.

Some steps that may be helpful for the child and yourself are: 1) belief and recognition that the phenomenon of a ‘lack of agency’ is occurring and that there is something that can be done about it, 2) explain to him your understanding of a lack of self-agency (optional – but can help some children realize that they have not caused this to happen), 3) remember - the child is not complying or not demonstrating initiative because he is difficult, but instead his body will not let him, 4) the child needs to learn that there is ‘space’ for him in the relationship with you. This is accomplished by always creating an opportunity for dialogue between the two of you (even if he does not speak). He needs to know that you are creating ‘space’ for him with you, 5) give him the time to be in relationship with you. He may feel rushed in the relationship. Let him know that he can take the time he needs to communicate, 6) help him symbolize what is on his mind. For example, when watching television or a video, talk about what you see the people doing and feeling and ask him what he sees and feels as well. Continue to do this in the relationship between the two of you by always asking what he is feeling. If you are playing ball, have a continuous dialogue with him such as “I am catching the ball and now I am throwing the ball back to you and you caught it." This process can be done with nonverbal, echolalic and higher functioning children, 7) Give room for feelings in the relationship – positive and negative and 8) validate and recognize every action of self-agency and initiative he takes. By doing this you are not only reinforcing his attempts at initiation, but also you are helping him become more conscious of himself.